valerie
Patient
Last on 3 months ago

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valerie

Tell us about your experience with/connection to Huntingtons Disease

“I am going into stage 4 of HD.  I have hallucinations even with meds, outbursts, and somedays my chorea and dystonia is horrible.  I do have some good days.  I always dread going to my doctors because they are just treating my symptoms and eventually one ends up on so...”

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Displaying 1 - 7 out of 7 comments

  • mckenzie

    hello my name is mckenzie and i live in jax we have a support group here if you would like to come let me know

    5 months ago

  • Rob

    Hi Valerie! Thanks for the add!

    5 months ago

  • Jean E.

    Hi Valerie - Do you attend the HD support group in JAX? I'm from the west coast in Florida. I think it's fantastic you're writing a book about your experience having HD! My daughter, Kelly, really wanted to do that too to help people understand how her mind processed things and how having HD affected her. But she never did. I had a good friend with HD for years who was excellent at expressing how someone with HD thinking process worked. Her name was Lou Wilkinson and she was from Calgary, Canada and she was writing a book too. Sadly she died suddenly, not from HD but from doctor's not finding an infection she had. I put a lot of Lou's writings on a website, maybe you'd like to read them: http://huntingtondisease.tripod.com/louisewilkinson/. Keep us posted on your book! Love, Jean

    6 months ago

  • Donna

    Valerie, Thanks for responding to my comment. I am new here and it feels good to know others are out there who understand.

    10 months ago

  • Donna

    You are a beautiful person, inside and out. It is caring unique people as yourself to educate others who feel lost and robbed of a future but it is not the end of the tunnel. Knowledge is power. You are making a positive difference. Thnk you. xo

    10 months ago

  • Robert Antón

    Welcome to the community!

    10 months ago

  • jenny

    Welcome Valerie, yours will be a valuable insight and your input to others here very much appreciated. You have a unique perspective...Glad to have you with us. Jenny

    10 months ago